“For me, the wheelchair symbolizes disability in a way a cane does not.”
- Annette Funicello (MS since 1987)
By the spring of 2008 I had become a proficient scooter pilot. I drove the “blue streak” almost everywhere I went, indoors and out. I always carried the forearm crutches on the back, but I found myself using them less and less as my leg strength continued to deteriorate.
The more I used the scooter, the more evident its limitations became to me. The seat was not designed for continuous occupation. Because I needed to keep two hands on the tiller when driving, it was difficult to carry any items with me. The tiller itself prevented me from getting close to desks and tables. Being a three wheeled scooter, it was tippy on uneven surfaces.
Neither did the scooter climb curbs, lift me up to eye level with standing people, operate in four wheel drive mode, or negotiate stairs.
I can't remember exactly how it happened, whether it was over a period of minutes or days or weeks, but eventually I began to consider graduating to a wheelchair. That would be a huge step for me. Thus far I had progressed from a cane, to two forearm crutches, to the scooter. These assistive devices each implied a certain level of disability; a wheelchair represented the ultimate level of disability, well mobile disability anyway. I suppose continuous occupation of a hospital bed represents the ultimate level of immobile disability.
On April 10, 2008 Kate showed up at my house. She unloaded the demonstration iBOT from her van and brought it inside. I anxiously transferred from my scooter to the iBOT. Kate pushed a flurry of buttons to calibrate the iBOT for my weight, and then we were off and running. We tried out both the standard mode and balance mode inside. Since I didn't have any steps in my house we moved to the back deck to play with the stair climbing mode.
In Maine, there’s a good reason that we refer to the month of April as mud season. My lawn was still soft from the recently melted snow. Nevertheless, we put the iBOT in four-wheel-drive mode and slogged all around the yard. I was at once impressed and horrified as I drove the iBOT over my lawn, leaving two parallel ruts in my wake (they disappeared after a few weeks).
Here’s my journal entry from that day:
“Had in home test drive of iBOT 4000. Must have it.”That brief entry says it all. I was on a mission.
The next step in the process required me to spend a few hours at a rehabilitation hospital in New Hampshire. It was a two-way interview. I would spend an afternoon further evaluating the iBOT (this was enjoyable, but unnecessary). At the same time, an independent consultant would run me through the ropes to make sure that I was physically, mentally, and otherwise capable of operating this complex device.
I drove to the rehab hospital and met up with Joanne. She helped me learn all the features of the iBOT, spending a little more time than Kate had with each mode. Joanne scrutinized my every move and asked me a million questions about my condition, and about how I intended to use the iBOT.
I was, however, beset by a lingering doubt. Did I really need such a robust assistive device? I felt that all of my adaptations to date had been justified, and timely. But was I jumping the gun on this move? I mean, I could still walk short distances using my two forearm crutches. It was getting harder and harder all the time, but I still could. Was this the right time in my disease progression for a power wheelchair?
Near the end of our evaluation I shared this concern with Joanne. She agreed that I might not be an ideal candidate for this chair, but for a completely different reason. She was somewhat hesitant to recommend me for the iBOT, not because I wasn't ready for it, but because she worried that I might not be able to operate it for very many years, due to my worsening MS.
I was taken aback. “What you mean?” I asked, naively. “What could go wrong with me that would prevent me from being able to operate this wheelchair?”
Note to self: be careful what questions you ask, as you may not like the answers.
Joanne hesitated, and then said, "Well, since you asked…”
She methodically spelled out the declines in function that I might experience in the coming years (some of which have already come true). Suffice it to say this was a bit of a wake-up call for me. I never again worried whether I was ready for a power wheelchair. Today, like Joanne, I only worry about how many more years I can continue to enjoy the iBOT.
Joanne also pointed out that some power wheelchairs are designed to address the issues of more severely disabled people. The iBOT is not one of those chairs.
“OK. Thanks. But none of that bothers me,” I said. “I've got to have one of these chairs. What's the next step?”
I had made the wheelchair decision.
For more information on the iBOT wheelchair, please see my three previous posts:
This is Not My Mother’s Wheelchair (Part 1)
This is Not My Mother’s Wheelchair (Part 2)
What Would Mitch Do? or WWMD?
Also, to see my iBOT in action watch these two videos:
Taking the iBOT to the Beach
Taking the iBOT to Two Lights State Park
*note that the iBOT is no longer available for sale